The $100 for Hannah Challenge 

One Mission: A Future Without HLHS.

When we started thinking about how to continue Hannah's legacy, we wanted to create something that represented both the little girl she was and the many children who continue to face a congenital heart defect diagnosis. Approximately 1 in 100 babies are born with a congenital heart defect (CHD). Behind that statistic is a child with a name, a family with a story, and a journey that changes their lives forever. For us, that child was Hannah.

Our daughter, Hannah, was born with Hypoplastic Left Heart Syndrome (HLHS), one of the most severe and complex congenital heart defects. From the moment she took her first breath, Hannah proved she was a fighter.  At just days old, Hannah underwent her first open-heart surgery, the Norwood procedure, but complications required her first ECMO run. After fighting her way back, we were blessed to bring her home and experience precious moments together as a family. The road ahead was never easy. Keeping Hannah healthy enough for her second-stage surgery, the Hemi-Fontan procedure, brought more challenges, including another 10 days on ECMO. After successfully completing her surgery, we were given three beautiful months at home, months filled with smiles, milestones, and memories we will treasure forever. Then, our world changed. Hannah became critically ill and suffered multiple cardiac arrests, causing her heart function to decline. She was transferred for a heart transplant evaluation. During her 172-day wait for a heart transplant, Hannah showed everyone what true strength looked like. Despite everything she endured, she learned more than 30 words and signs, learned to walk, enjoyed wagon rides around the hospital, and loved spending time with her big sister, all while on ECMO.  After 172 days, we received the call we had prayed for: a donor heart had been found. Hannah's transplant surgery went smoothly, and we finally felt hope for the future we had dreamed about. Sadly, just days later, her new heart began to struggle. Hannah returned to ECMO, and after the most difficult 21 days of our lives, our sweet girl passed away at 22 months and 1 day old, only 21 days after her heart transplant. Although Hannah's time with us was far too short, her impact has been immeasurable.

After losing Hannah, we knew her story couldn't end there. In her honor, my husband and I founded Hope for Hearts (www.hopeforheartssd.org), a nonprofit dedicated to supporting families impacted by congenital heart defects and transplants. Through financial assistance, education, and support, we strive to provide families with the resources and community we wished we had during Hannah's journey. Hannah's legacy now reaches families across the country but we also believe in creating a future where fewer families experience the heartbreak we did.

As our organization has grown, so has our vision. Supporting families today is incredibly important, but we also want to help create a future where fewer families receive an HLHS diagnosis in the first place. That's why Hope for Hearts is incredibly honored to partner with Dr. Paul Grossfeld and support his groundbreaking research into the genetic causes of Hypoplastic Left Heart Syndrome.

Why We're Raising Money

We're asking each of you to give $100 in Hannah's honor to advance Dr. Grossfeld’s lifesaving HLHS research at Rady Children's Hospital. The number 100 carries a special meaning. Approximately 1 in 100 babies are born with a congenital heart defect, meaning every year thousands of families enter a journey they never expected, one filled with surgeries, uncertainty, and hope.  Our goal is to raise enough funds to support Dr Grossfeld’s research through 2027, starting now!

While surgeries and heart transplantation have dramatically improved survival over the past several decades, they are not a cure. Children born with HLHS continue to face lifelong medical challenges, multiple surgeries, heart failure, arrhythmias, neurodevelopmental complications, and the possibility of requiring a heart transplant later in life.  

The future of HLHS depends on understanding why it develops and how we can change that.

About Dr. Paul Grossfeld's Research

Dr. Paul Grossfeld is a board-certified pediatric cardiologist at Rady Children's Hospital and Clinical Professor of Pediatrics at the University of California San Diego School of Medicine. Alongside caring for children with congenital heart disease, he has dedicated his career to uncovering the genetic basis of congenital heart disease, with a particular focus on Hypoplastic Left Heart Syndrome (HLHS).

Dr. Grossfeld is internationally recognized as the world's leading expert on Jacobsen syndrome, a rare genetic disorder that he discovered has an extraordinarily high incidence of HLHS. This discovery helped identify important genetic pathways involved in heart development and has significantly advanced our understanding of why some children are born with HLHS.

Today, Dr. Grossfeld leads an internationally recognized multidisciplinary research team investigating the genes responsible for HLHS. His laboratory has identified several genes involved in ventricular development, including the ETS1 gene, which plays a critical role in forming the left side of the heart during fetal development.

His team's most recent work identified two novel cardiac growth factors that are deficient in genetically engineered mice lacking the ETS1 gene. These findings provide new insight into the molecular mechanisms responsible for one of the most common forms of HLHS and offer exciting possibilities for developing targeted therapies that could improve ventricular development in children with HLHS and potentially benefit adults recovering from heart attacks as well.

With more than 70 peer-reviewed scientific publications, including 19 focused specifically on HLHS, Dr. Grossfeld continues to lead some of the most promising research in congenital heart disease. This is why Hope for Hearts chose to partner with Dr. Grossfeld. We believe investing in research today creates hope for the children and families of tomorrow.

Why This Matters to Us

When Hannah was born, there wasn't a cure. There wasn't a medication that could make her heart grow. There wasn't a way to prevent HLHS. There were only surgeries designed to help her survive. Families like ours place their hope in physicians and researchers who refuse to stop searching for answers. Every scientific breakthrough brings us one step closer to understanding the genetic causes of HLHS, improving treatments, and one day changing what this diagnosis means for future families. That future is worth fighting for.

Every Dollar Goes Directly to Research

One of the things we're most proud of is that 100% of every donation made through this fundraiser goes directly to Dr. Grossfeld's HLHS research. There are absolutely no administrative fees or overhead costs deducted from your gift, every dollar directly supports groundbreaking research that has the potential to transform the future of congenital heart disease.

To make your impact go even further, Hope for Hearts will match donations made through this fundraiser up to $3,000. That means your gift has the opportunity to be doubled, helping us maximize our support for Dr. Grossfeld's research and bring us one step closer to better treatments and a brighter future for children with HLHS.

Together, we can honor Hannah's legacy by investing in research that has the potential to change the lives of countless heart warriors and their families.

Learn More About the Research

Read Dr. Paul Grossfeld's Annual Research Report:  https://online.flippingbook.com/view/1048610436/2/

Join the $100 for Hannah Challenge

If Hannah's story has touched your heart, we invite you to become part of her legacy.

• Donate $100 if you're able. Give another amount if that better fits your circumstances. Every contribution helps move this research forward.

• Share this page. Tell Hannah's story. Help us bring hope to families who have yet to begin their journey.

• Ask ask your employer if they have a matching program.  That could TRIPLE the impact of your donation, with the match of Hope for Hearts!

Together, we can honor Hannah, who has 1 in 100,  not only by supporting families through Hope for Hearts, but by investing in the research that could change the future of HLHS for generations to come.

One mission: a future where fewer families hear the words "your baby has a heart defect."